Who Will Care for My Child When I Can’t? Building a Future for Profound Autism with Nicole Milo
From Inchstones with Sarah | Autism Advocacy & Caregiver Stories · 00:29:16
Show by Sarah Kernion | Profound Autism Mom and Caregiver Advocate
Who will care for my child when I can't? For parents raising children with profound autism, the question of adulthood can feel impossibly far away—until suddenly it isn't. Nicole Milo's son Caleb entered residential care at five and spent 17 years living hours from his family. As adulthood approached, Nicole confronted the disability-services cliff and realized the existing options didn't match the life she envisioned for him. So she began building another one. Nicole joins Sarah Kernion to discuss profound autism, residential care, guardianship, adult services, caregiver grief, advocacy, collaboration and House of Hope, the micro-residential model she created to bring Caleb back to his community. This is a conversation about planning long before 21—and allowing ourselves to ask a question many exhausted parents have stopped asking: What would the best possible adult life for my child actually look like? Chapters (00:00:00) - Introduction to Nicole Milo and House of Hope(00:01:21) - The emotional toll of raising a child with profound autism(00:03:37) - Sending Caleb to residential school and the guilt of distance(00:05:59) - Learning to surrender and trust caregivers(00:07:16) - Deciding to build a solution before the cliff hits(00:09:28) - Facing fear and committing to action despite uncertainty(00:12:00) - Faith, grace, and pushing through weakness(00:13:27) - Collaborative advocacy instead of adversarial fighting(00:16:10) - Give and take with schools and agencies(00:18:38) - Facing judgment from the community over resources(00:20:20) - The transition cliff and guardianship challenges(00:21:22) - Designing the micro residential model and staffing gaps(00:24:18) - Helping other families find hope and vision(00:27:25) - Closing reflections and gratitude
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